Still Searching for Answers

I am so bound and determined to put an end to this disease that I will not stop searching for answers until I find some. Although I am grateful to find that I do have the MTFHR genetic defect which has probably led to me having Sarcoidosis, I am still very absolute about trying to find something  to put this disease into remission.

It has been 7 months since I saw my internal medicine doctor and for the past month I have felt as if I needed to get in and see him soon. I have also been nervous with the new symptoms I have been having and fear the spreading of my sarcs into other areas of my body. I feel that I need his input on what he thinks is going on and what I need to do next. I met with him and told him about the new symptoms I am having from breathing attacks, migraines, swollen glands and lymph nodes in my neck and head.

He told me all of these symptoms I am having are all related to my sarcoidosis. Since this disease spreads to other areas of the body he wants me to see the specialists at the University of Utah.  He wants me to start with the rheumatologist and pulmonologist who work together and who specialize in treating sarcoidosis. When I called to make an appointment it is a 6 months before their next appointment. There are not many doctors in Utah who specialize in this disease. My doctor told me he would get a referral into them and see if they can get me in sooner.

My husband and I have done some research and have found  about 3 major Sarcoidosis speciality centers around the United States. If we are not able to get help at the University of Utah, my hubby said we might have to be taking our family vacation to one of these Sarcoidosis resorts… I mean centers!
WOW I told him sounds like fun! I bet the kids would love that!!! haha! These sarcoidosis speciality centers check you from head to toe and really assess where the sarcs are in your body and determine what stage you are in. Hopefully we will find some answers soon and in the process I will stay try to find peace by staying positive and patient with myself and this disease.